Pixels Perpetual Shine: The Mediation of Illness, Dying, and Death in the Digital Age

PIXELS PERPETUAL SHINE: THE MEDIATION OFILLNESS, DYING, AND DEATH IN THE DIGITALAGE

Elizabeth Drescher

‘‘I like to think that something survives after you die,” [Jobs] said. “It’s

strange to think that you accumulate all this experience, and maybe

a little wisdom, and it just goes away. So I really want to believe

that something survives, that maybe your consciousness endures.”

He fell silent for a very long time. “But on the other hand, perhaps

it’s like an on-off switch,” he said. “Click! And you’re gone.”

Then he paused again and smiled slightly. “Maybe that’s why I never

liked to put on-off switches on Apple devices.”

Walter Isaacson, Steve Jobs1

Author Biography

Elizabeth Drescher (Ph.D., Graduate Theological Union, 2008) teaches in the Graduate Pro-

gram in Pastoral Ministries at Santa Clara University. Her research and writing focuses on

the spiritual lives of ordinary believers today and in the past. She is the author of Tweet If

You ♥ Jesus: Practicing Church in the Digital Reformation (Morehouse, 2011) and, with Keith Ander-

son, of Click 2 Save: The Digital Ministry Bible (Morehouse, 2012). Her current project, Choosing

Our Religion: The Spiritual Lives of Religious Nones, explores the theologies and ecclesiologies of

believers who do not identify with an institutional religious tradition. She is a frequent con-

tributor to the online magazine Religion Dispatches, where she writes about the relationship

among new media, culture, and religion. Work on this essay was supported in part by a

Hackworth Grant for Research and Teaching in Applied Ethics from the Markkula Center for

Applied Ethics at Santa Clara University.

204 . C R O S S C U R R E N T S © 2012 Association for Religion and Intellectual Life

I received an email from my mother recently. My sister’s birthday was

coming up, and my mother had set up a reminder on her email account

more than a decade ago that has faithfully let me know a month before

each of my siblings’ birthdays, presumably so that I can plan in advance

to feel guilty should I forget one or another of them anyway. The thing

is, my mother died in 2005, so this automated guilt-inducer now has an

eerie beyond-the-grave quality that, on the one hand, vaguely creeps me

out every time it happens and, on the other, prevents me from blocking

“anna1121” from my account out of a sentimentality that I cannot quite

sort out. I know the email is not really from my mother, and yet I can

fully imagine her pecking away at a mystical keyboard in whatever sweet

by-and-by she now inhabits.

Such of course is life—and death—in the Digital Age, our identities

extended from physical to digital space, from whence we can never fully

retrieve or otherwise control them and where they live on long after our

own departure. In Your Digital Afterlife, John Romano and Evan Carroll

explore the practical implications of the massive quantities of digital

information that remains after death. From family photographs to email

to financial accounts, Romano and Carroll offer helpful advice about how

to protect your “digital legacy.” As one might expect, there are now a full

range of online sites—Romano and Carroll’s thedigitalbeyond.com per-

haps the best known of them—and a growing army of consultants to

help secure sensitive personal and financial data, provide a digital trail

for one’s heirs, and, should it be necessary, delete a porn account.2

Putting one’s digital affairs in order for the afterlife is certainly all to

the good, but it is not the concern that comes to mind every time I get

an email from my late mother’s apparently eternal Yahoo account. The

questions here are more pointedly spiritual, more robustly theological.

I am not thinking specifically about mortality, immortality, and the chaos

at their intersection that animated the short-lived futuristic series “Capri-

ca” and bedeviled the freakishly undead characters of the BBC’s much

more successful “Torchwood” science fiction drama.3 But these popular

works, along with the proliferating number of vampire- and zombie-

themed television programs and movies, do seem to represent the

extremes of a re-mediation of end-of-life illness, dying, death, and

bereavement that is increasingly influenced by our participation in social

networking communities like Facebook, Twitter, YouTube, and blogs.

J U N E 2 0 1 2 . 2 0 5

E L I Z A B E T H D R E S C H E R

My own, less fantastic questions have been more focused on how

new digital media, as they have begun to restructure day-to-day commu-

nication practices and, in turn, social relatedness, reform our understand-

ing of modernity’s dichotomized relationships between illness and

wellness, living and dying, the living and the dead, and the now and the

hereafter. If, as I argue in what follows, digital social media are inviting a

dissolution of metaphorical and experiential boundaries between these

states, what is the attendant effect on Christians’ understanding of God’s

presence in illness, dying, death, and bereavement and on concepts such

as “eternity” and “salvation” that are subject to radical restructuring in

postmodern, digitally integrated culture?

As much of our everyday life unfolds in social networking sites (SNSs)

—nearly 60% of adults in the United States belong to at least one SNS4—

what death means both to the dying and to those who attend and grieve

them is bound to be changed by the experience of living in a time when

much of what we know of ourselves and each other is never really, once

and for all, gone. In Western high modernity,5 the end of life was one of

the most private and intimate life episodes both for the dying and for

those who cared for and grieved them. We now live in a more fully post-

modern world in which blogs, YouTube channels, and Facebook profiles

turn much of our lives into episodes of reality TV that would seem

incomplete, inauthentic, and lacking in the social transparency that

defines the Digital Age6 if, along with sharing births and graduations and

weddings and vacations, they did not also narrate our dying and serve

our bereavement. If more a socially limited, pre-Facebook digital medium

like email has already changed how I experience my mother as dead,

how have today’s social networking practices changed how we experience

our own and others’ deaths?

This last question came into sharp focus in the summer of 2011 as

Kirstin Paisley, a former student, who had for some time been exploring

the effect of what came to be a terminal melanoma on her life and her faith

in a blog,7 shared the final weeks of her life with an active Facebook com-

munity.8 Kirstin’s Facebook page continues to function as the sort of digi-

tal memorial that has become more and more common on social

networking sites. Indeed, Facebook has a formal process for “memorializ-

ing” the profile of a deceased family member or friend, as do most other

major social media platforms.9 But in the weeks before her death, as news

206 . C R O S S C U R R E N T S

P I X E L S P E R P E T U A L S H I N E

spread among her various networks of friends, seminary colleagues, social

justice workers, and so on, Kirstin’s Facebook page was something else

entirely—a sanctuary, a prayer wall, a site of hope and remembrance.

As such, social media locales like Kirstin Paisley’s Facebook page are

also significant sites of cultural and religious transformation, the raw

ingredients of what has perhaps till now been the final human rite of

passage—prayer, remembrance, condolence—now “cooked” into a new

ritual practice that remarks the boundaries of life and death, mortality,

and eternity in the Digital Age. Like many of the other changes we have

begun to see in religious practice related to the widespread use of social

media, what is happening appears to be less revolution than a form of

reformation10—an amending of practices aimed to return them to an

earlier, presumably more pure or authentic state.

To explore the ways in which social media participation can be seen

to effect changes in the meaning of dying and death, I describe what I

see as central elements of Kirstin Paisley’s end-of-life and after-life

social media presence in some detail, moving from her early blogging

on her illness and its spiritual meaning, to the announcement of her

decision to end treatment on her blog and Facebook wall, to her local

and digital funeral, and her digital afterlife on the blog and Facebook.11

I then turn to more general reflections on questions raised by the prac-

tices I observed about an emerging understanding of dying, death, and

bereavement that we may expect to extend from digital to physical

spaces.

Before exploring the experience of Kirstin’s digital illness, dying,

death, and afterlife, however, it is worthwhile to briefly note the ways in

which our understanding of these concepts developed in the late modern,

mass media culture as background to their emerging meaning in post-

modern, digital culture.

Mediating between the living and the dead

“Illness is the night side of life, a more onerous citizenship,” Susan

Sontag famously began her classic Illness as Metaphor. “Everyone who is

born holds dual citizenship, in the kingdom of the well and in the king-

dom of the sick. Although we all prefer to use the good passport, sooner

or later each of use is obliged, at least for a spell, to identify ourselves as

citizens of that other place.12

J U N E 2 0 1 2 . 2 0 7


Sontag’s important meditation focused on the role of language—met-

aphors—in the treatment of illness, and her work had a powerful influ-

ence on the ways in which those with cancer, AIDS and other serious

illnesses, medical professionals, and other caregivers named and articu-

lated the effects of diseases and spoke of those “living with” rather than

“suffering from” them. In the decades between 1977, when Sontag wrote

while contending with her first diagnosis with cancer, and 2004, when

she died of the disease, the language of victimization has been almost

fully expunged from the vocabulary of illness and its treatment. Sontag,

as Foucault had done in his study of prisons,13 mapped the relationship

between the separation of a socially, spiritually, psychologically, and phys-

ically “flawed” class of bodies from the bodies of the “normal,” the

“healthy,” the “well,” and the language used to describe these others as it

shapes geographical, psychic and embodied reality.

Sontag lived in a modern, mass media-driven world in which the met-

aphoric field that dominated Illness as Metaphor—place—and the physically

separated reality in which, at least for a time, the person with illness is

situated could not be easily bridged in everyday life. Those exiled to the

“kingdom of the sick” might enjoy moments of purgation—a visit from a

friend, a brief sojourn to the outside world—but this respite itself rein-

forced the non-well status of the sick person and her compromised citi-

zenship in the “kingdom of the well.” The sick speak a distinctly

accented dialect, their sentences punctuated with sighs of weariness,

their bodies a syntax structured with canes and wheelchairs, intravenous

tubes, and sundry medications. This language itself, on the tongues of the

sick and in the mythic translations of the well, Sontag argued, was more

deadly than the most dread disease.

Sontag’s experience is distinctly modern, then. Her exploration of the

language of illness began in the heart of modernity with the treatment of

tuberculosis in the early nineteenth century, as the effects of Cartesian

metaphysics had redefined premodern medicine in scientific, clinical, and

social terms. As in other fields, modern medicine depended on clear

demarcations in modes of being and spheres of action. Sick people were

separated, physically and ideologically, from the well, ideally in physical

structures controlled by medical experts who monitored and regulated

the treatment of the ill as well as the language used to describe their

ailments and the experience of illness.



Because Sontag was a well-known writer, she had the opportunity to

narrate her experience of illness and share it in print. In the final years of

her life, the Internet and associated new media would begin to democra-

tize access to the means of producing and distributing intellectual content.

And, not long after her death, the rise of social media sites like Facebook

and Twitter would shift the center of media production and distribution

from content in itself to content as a feature in the development of rela-

tionships with others as collaborators and co-distributors. But prior to the

widespread popularity of blogging in the early 2000s, few ordinary people

living with one or another serious illness were able to bridge the “kingdom

of the well” and the “kingdom of the sick” with their own narratives.

Blogging: a less onerous citizenship

Social media have changed all that, allowing millions upon millions more

people to contribute to often global conversations about the everyday

effects of serious illness and its treatment and the experience of dying. The

first digital forum for this widened conversation was the blog, a form of

online journaling that developed in the 1990s primarily within the high

technology world, and which gained widespread popularity after easily nav-

igated personal blogging sites such as LiveJournal and blogger.com were

launched in 1999.14 A Google search of the phrase “cancer blog” in early

2012 produced more than 225,000,000 results,15 some medical, some insti-

tutional, but the vast majority personal reflections on everyday life with

cancer. Many of these blogs are continued by surviving spouses, family

members, and friends when the original blogger dies.16 Not counted among

this total are blogs started before diagnosis in which a blogger integrates

discussion of her or his condition into other areas of interest or concern.

As a result of this shift in media participation and practice by people

with serious illnesses and those caring for them in personal, medical,

and, increasingly, pastoral capacities, the silence and social isolation of

the sick and dying, which characterized much of the modern period, has

been significantly eroded. As in other elements of life, new media have

made illness, dying, and death significantly more visible to those affected

directly and indirectly as well as to the public more generally. The regular

narration of illness, dying, death, and bereavement in social media sites

has removed, at least at a very basic physical and psychological level,

much of the mystery surrounding the end of life.

J U N E 2 0 1 2 . 2 0 9


Of course, what may or may not come next—after death—is entirely

another matter, one which is understandably a frequent preoccupation of

end-of-life bloggers. So, too, are questions about why some people

develop grave illnesses and others do not and what the experience of

severe illness and impending death means in the remaining life of the

terminally ill person and the people who will survive her or him. Like-

wise, blogs by and for the seriously ill frequently explore how religious

outlooks or spiritual practices might affect well-being or healing.

Whether institutional, community, or personal, then, a significant focus

of such blogs is spirituality—this meaning anything from denomination-

ally defined religious identification and associated practices to more gen-

eral notions of inner peace, universal connectedness, relationship to a

higher power, or an existential experience of hope. Indeed, a Google

search of the phrase “cancer spirituality blog” yields 15,900,000 results.17

Kirstin Paisley’s blog, “Barefoot and Laughing,” did not begin with

her diagnosis. She began it in 2005, as she headed off to seminary in

Berkeley, California, from her home in Olympia, Washington. By the time

she was diagnosed with melanoma in the spring of 2008, she had become

a fluid and frequent writer in the blog genre and had connected with a

wide community of bloggers who wrote about their own faith, spiritual

explorations, commitments to social justice, and sundry everyday events

of lesser heft. When she noted on April 11, 2008 that she had discovered

“a strange thing on the back of my left ear,” which the dermatologist sug-

gested might be “a not-scary kind of cancer,” the news fell between a

note that Kirstin had recovered her misplaced wallet and a rumination

on whether people should boycott the Beijing Olympics. Though, as

noted above, many people with cancer begin blogging after their diagno-

sis, for Kirstin, even cancer was a part of an ongoing life narrative rather

than, at least initially, a defining story in and of itself. The morning on

which she first identified what came later to be recognized as melanoma

began with this post:

Bit of playfulness for Friday

I have some friends in the student-family apartments up the block.

They’ve been having some unwanted company, in the form of rats.

So after the gory murder of one, they set traps.



These traps—intended to kill the vermin they catch—are baited

with organic apples. [10:56 AM, April 11, 2008]

By later in the same day, in a post entitled “Playing Health Care

Catch-Up,” Kirstin was nervously calling on her wide community of blog-

ging companions for support:

Basal-cell carcinoma is not that big of a deal—once removed, it’s

gone. I’m not terrified, but I am rattled a bit. And I’m trying not to

be too nervous about the obvious possible complication of eye sur-

gery. Pray, please. [4:40 PM, April 11, 2008]

The practice of blogging for people like Kirstin, then, can be one of

integration, both personal and social, overcoming the separation and iso-

lation that previously characterized the existences of the sick and dying.

A global embrace

Kirstin’s blog posts through the two next years, as her condition grew

more serious and her prognosis more perilous, nonetheless retained the

mix of the quotidian (sushi feasts with friends), the spiritual (reflections

on her relationship with God expressed in her work with the homeless,

her health condition, and the care she received from a network of online

and local friends), and the medical (updates on diagnostic tests, surgeries,

treatments). Importantly, the apparent value and meaning of Kirstin’s

blog-writing practice was more than simply personal expression. Although

blogging is often compared to past practices of diary-writing or journaling

in offline formats, it differs significantly in that it is also a social act. It

invites readers to share in the writer’s experience, to reflect upon it, to

add to the original content through comments, and to share the whole or

parts of the original and extended conversation outside of the blog itself,

through links or quotations on other social networking platforms.

One sees, then, in blogs generally, and particularly pointedly in those

that focus, as Kirstin’s did, extensively on illness and dying and the way

in which these life states impact relationships with God and others,

media at work in the way that Marshall McLuhan understood—as exten-

sions of the body and of human consciousness. Writing in 1964, McLuhan

insisted:

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During the mechanical ages we had extended our bodies in space.

Today, after more than a century of electronic technology, we have

extended our central nervous system itself in a global embrace,

abolishing both space and time as far as our planet is concerned.

He continues with a somewhat darker prediction:

Rapidly, we approach the final phase of the extensions of man [sic]

—the technological simulation of consciousness, when the creative

process of knowing will be collectively and corporately extended to

the whole of human society, much as we have already extended

our senses and nerves by the various media.18

McLuhan was writing, of course, before the advent of social media,

which—absent the desire for unification and uniformity of consciousness

that characterizes mass, broadcast media—depends more on collabora-

tion and independent creative appropriation and repurposing of content.

Where McLuhan was rightly concerned about the totalizing and numbing

effects of electronic broadcast media, social media depends on agency

rather than mere consumption. One sees, one reads, one comments, one

shares within and across social media platforms in ways that have the

potential to extend and enrich a diverse and creative critical conscious-

ness rather than reinforcing and reproducing a hegemonic consciousness.

We see this perhaps most clearly in video-sharing social media sites

such as YouTube and Vimeo where image- and message-based broadcast

practices are “contained,” to use McLuhan’s terminology, by the social

practice of commenting on videos, ranking them, sharing, editing and re-

purposing, responding to and imitating or mocking them.19 The tremen-

dously popular video of late Carnegie-Mellon professor Randy Pausch’s

lecture “Really Achieving Your Childhood Dreams,” delivered after Pausch

had learned that he was terminally ill with pancreatic cancer, developed

its enduring cultural significance not because of its appeal in broadcast

media venues like the Oprah Winfrey Show. Rather, such traditional media

outlets came to know of the video because it had “gone viral” on You-

Tube through the actions of millions of individual viewers, who watched

the video of Pausch’s “last lecture,” shared it with friends, and com-

mented on its meaning in their lives.20 Four years after the posting of the



video in 2007, and three after Pausch’s death in 2008, viewers continue

to share the video, to create video responses, to use the comments sec-

tion as a site for reflection on the meaning of death, and for memorials

for lost family and friends.

Here, as in online blogging, the collaborative, social function of new

media overwrites the totalizing impulse of broadcast media. Illness,

dying, and death are not experiences isolated from the whole of life, nor

are they commodities packaged into unifying messages by a mass media

elite. Rather, new social media integrates illness, dying, and death into

daily conversation and the ebb and flow of everyday life. In some ways,

new digital media practices evoke pre- and early modern end-of-life ritu-

als in which the body of the sick, dying, or dead person resides in the

community or the home until it is given over, through burial, cremation,

or other means, to the afterlife.

The cloud of digital witnesses: dying on facebook

But something else also happens as illness, dying, and death are engaged

in social media spaces, something that further extends the digitally medi-

ated body and, in a certain understanding, human consciousness in ways

that were are not possible in broadcast media spaces and certainly not

before the advent of electronic media. In the case of Kirstin Paisley’s

digital presence, this was—and still is—especially true with regard to

Facebook.

Along with her blogging, Kirstin was also an active participant on the

social networking site Facebook, her community of several hundred

“friends” overlapping and extending the network she had developed on

her blog.

Kirstin announced on her blog on June 16, 2011 that she had come to

the decision, with the support of a new physician and her friend Andee

Zetterbaum, her primary caregiver throughout the end of her life, to give

up on chemotherapy and begin hospice. She had been struggling with

breathing for some time and was wracked by pain from tumors all over

her body. After a trip to the emergency room, she wrote a long post about

the experience, an excerpt from which gets to the core of her decision:

…What matters most in my memory, and to my present reality, is

the conversation with the ER doc. She came to my bed; A was

J U N E 2 0 1 2 . 2 1 3


sitting on the other side of me. I had just taken my first infusion of

Yervoy the previous Friday. I’d never felt sure of it. I honestly felt

more pressured into it by my doctor, than willing to stay in the

fight myself. A and I have always been on the same page. I was

afraid it wouldn’t work; I was afraid it would only work a little. I’d

take baths and watch the tumors grow; I’d hear my own Darth

Vader breathing, and feel some ground slip underneath me.

This doctor, God bless her, gave us both permission to admit that.

I must have said something about the pain, frustration, and uncer-

tainty I was in. She answered, “How committed are you to chemo?”

[Andee] and I looked at each other, and we both teared up. We

knew. And it was okay. I looked back at the doctor. I knew the

words were mine to say: “Not in our hearts, really.” She, God bless

her, cried with us. And she got us connected with a palliative care

doctor, who is working with us until he can get us connected with

hospice.

This is the care I need. This is the care I finally had the readiness,

and the courage, to ask for. I’ve been fighting for three years.

That’s enough. Just saying, “I want hospice,” gives me so much

peace. I don’t need to fight to the bitter end. I don’t need to be a

warrior anymore. I can let go as my body wants to, into as much

comfort as possible.

Friends across the country and around the world—some known in

person, others only from the blog or Facebook—had already been actively

offering prayers, good wishes, inspirational photographs, videos, music,

and so for some time on Kirstin’s Facebook wall. But when this blog post

was linked to her Facebook wall, the page lit up. Dozens upon dozens of

comments piled up through the day, and Kirstin responded as she could

to them. “Ah, Kirstin. I’m so glad you are at peace with this. I really, truly

am. I hope it’s ok with you if I’m not,” wrote one friend. “Of course, it’s

okay,” Kirstin responded.

In the two weeks before her death, the Facebook wall became some-

thing of a sanctuary, a vigil site. Prayer was offered around the clock, by



the minute. As Kirstin’s strength waxed and waned, she wrote just two

more blog posts, and participated only intermittently on Facebook. By

the end of June, her friend Andee Zetterbaum had begun to post on her

behalf on Facebook, noting Kirstin’s appreciation for the many visitors

who had come to her bedside and the friends who had stayed with her

continuously on the Facebook wall. “The prayers meant so much to her.

Kirstin knew she is not alone. That she would never be alone,” said

Zetterbaum. “It was like the whole cloud of witnesses was with us both

at the end of her life.”21

They were with each other as well. Throughout Kirstin’s illness,

dying, and death, members of her community engaged not only Kirstin

herself, but each other, forming a network of care that, to a large extent,

continued to extend support after her death. As Kristin’s illness, dying,

and death had not been segregated from other life experiences, it like-

wise entered into the lives of those in her widely extended digital net-

work. Her life—and death—entered the lives of all those who knew her,

lingering there after her passing. In this sense, the digital medium

became not something that stands in between, but something that con-

nects in profoundly personal and communal ways.

Pixels perpetual: the digital afterlife

On July 1, Zetterbaum announced on Kirstin’s blog that she had died that

evening. Friends quickly carried the news to the Facebook page. Prayers

erupted again, friends continuing to speak directly to Kirstin as she

moved—their prayers expressing a shared theology—from this life to the

next. Likewise, with Zetterbaum, members of her extended community

began to plan how her memorial would be shared with her online com-

munity, this one of Kirstin’s final wishes as she and Zetterbaum wrote

her funeral liturgy.

A memorial service and inurnment were held for Kirstin at Trinity

Episcopal Cathedral in Sacramento and were videotaped for later sharing

on the blog. Again, members of Kirstin’s blog community shared links on

Facebook to the service, and again prayers poured forth along with pho-

tographs of Kirstin, poems, and other memorials. For the next few weeks,

Kirstin’s Facebook page came to resemble one of the roadside memorials

that have popped up all over the country after an automobile accident—a

sustained pixilated grieving that marked Kirstin’s absence and presence.

J U N E 2 0 1 2 . 2 1 5


In the months since her death and funeral, however, the page has

changed into a more enduring memorial site of the sort that is increas-

ingly becoming an important part of the bereavement process.22 People

remembered Kirstin on her birthday in September. They continue to

share prayers, poems, photographs, and the like. It has also become an

active site for conversation among those dealing with various forms of

cancer, either themselves or as a caregiver.

“Prayers please for Betty and her family. In this season of suffering

and death, yet another huge blow,” wrote one friend recently on Kirstin’s

Facebook wall. It seems clear that she is appealing to Kirstin’s Facebook

network, and yet also there is a sense in the continued activity on the

page of Kirstin’s assumed presence there. Indeed, many friends address

her in the first person:

I love that you are so often at the top of my friends list. I smile

every time. I know you are keeping tabs on me. ♥

Thought of you today. You and your spirit always seem to pop into

my head when I’m feeling like I need to be lifted up. Gee, wonder

why that is?;) ♥

Kirstin, thank you for helping me find the right words to say to my

grandmother who is so very scared to die. I told her the story about

you and the cardinal. Even after passing into the next, you and

your life still helps minister to those in need.

And, as the page is administered still by Zetterbaum on Kirstin’s

behalf, Kirstin continues to add new Facebook friends.

Conclusion: translating the digital body

“Today man [sic] has no physical body, he [sic] is translated into informa-

tion, on an image,” said McLuhan.23 Yet, the physicality of Kirstin’s suffer-

ing through her illness and at the end of her life, and of the people who

continue to engage with “her” on her Facebook wall, despite the digital

mediation, seems to have been made real by the social nature of the new

media. All of this seems to make Kirstin’s digital presence something of

an eternal digital body—the same lingering, neither here nor there pres-

ence that so haunts me in my mother’s posthumous emails.



Clearly, digital social media have in many ways overcome the isola-

tion of the sick and dying that Sontag rightly saw as no small contributor

to suffering and even death. But have digital media allowed for the devel-

opment of a perpetual body and consciousness maintained by the memo-

ries shared and newly developed content added to the digital pages of the

deceased by those in their networks? What implications does this have

for our understanding of the reality, the finality of death in earthly time

and space? Or, for that matter, of the body as an individual being rather

than as a socially constructed phenomenon? Finally, as digital media

become more and more defining in our lives, how will the spiritual prac-

tices and religious rituals long associated with healing, care of the dying,

death, and bereavement be adapted to integrate the reality of digital par-

ticipation at the end of life? How, theologically, liturgically, and pastorally

will we translate the relics of contemporary living and dying into an

understanding of death that functions in digital and physical spaces

alike?

Notes

1. Isaacson, Walter, Steve Jobs (New York: Simon & Schuster), p. 572.

2. Carroll, Evan and John Romano, Your Digital Afterlife: When Facebook, Flicker and Twitter Are

Your Estate, What’s Your Legacy? (Berkeley, CA: New Riders, 2011).

3. A central theme of “Caprica” was the ontological status of life-like online avatars devel-

oped from downloads of physical and psychological characteristics from their live sources

after the death of the living source. In “Torchwood,” the meaning of mortality and

immortality comes into question after people stop dying regardless of the extent of their

illness or injury.

4. Hampton, Keith N. et al., “Social Networking Sites and Our Lives: How People’s Trust, Per-

sonal Relationships, and Civic and Political Involvement Are Connected to Their Use of

Social Networking Sites and Other Technologies.” Washington, DC: Pew Internet & Ameri-

can Life Project (June 16, 2011), 3. Available online at http://www.pewinternet.org/~/media//

Files/Reports/2011/PIP%20-%20Social%20networking%20sites%20and%20our%20lives.pdf.

5. I use the terms “high” or “late modernity” to refer to the second half of the 20th century,

in which Western culture mostly realized secular (or “post-traditional”), democratic

Enlightenment ideologies, fully developed capitalistic industrial capacity, and extended

ideological and cultural reach globally through hierarchically controlled mass media in

tandem with state-sponsored surveillance and violence. I rely here on Anthony Giddens,

The Consequences of Modernity (Stanford: Stanford University Press, 1991). However, contra

Giddens, who rejects postmodernity as a distinctive period, I see the effects of digital

social practice as mitigating, and in some cases undermining, the dominance of capital-

ism, the hegemony of the state in control through surveillance and violence, and the

pervasiveness of manufacturing-based industrialism.

J U N E 2 0 1 2 . 2 1 7


6. Cotterrell, Roger, 1999, “Transparency, Mass Media, Ideology and Community.” Cultural

Values, 3(4), pp. 414–426.

7. Paisley, Kirstin, “Barefoot and Laughing” (Blog). Accessed online at http://barefootand

laughing.blogspot.com/.

8. Paisley, Kirstin, Facebook Profile. Accessed online at https://www.facebook.com/kirstin.

paisley.

9. The Facebook memorializing policy is available online at https://www.facebook.com/help/

contact.php?show_form=deceased.

10. I discuss the reformational potential of religious practice in social media communities

in my Tweet If You ♥ Jesus: Practice Church in the Digital Reformation (Morehouse, 2011).

11. Prior to pursuing this project, I consulted with the Rev. Andee Zetterbaum, who was Kir-

stin’s best friend and her primary caregiver during the last year of her life. Rev. Zetter-

baum felt strongly that it was Kirstin’s desire to share the whole of her life with as wide

a network as possible, including, as will be discussed in what follows, broadcasting her

funeral on her blog and Facebook wall. I discuss the pastoral implication of Kirstin’s

decision to continue active participation in social networking sites at the end of her life

in my book, with Keith Anderson, Click 2 Save: The Digital Ministry Bible (Morehouse, 2012).

12. Sontag, Susan, Illness as Metaphor and AIDS and Its Metaphors (New York: Farrar, Straus and

Giroux, 1977), p. 3.

13. Foucault, Michel, Discipline and Punish: The Birth of the Prison. Translation of Surveiller et

Punir: Naissance de la prison (Paris: Editions Gallimard, 1975). English translation by Alan

Sheridan. (New York: Pantheon, 1978; 2nd edition, New York: Vintage Books, 1995).

14. Boyd, Dana M. and Nicole B. Ellison, “Social Networking Sites: Definition, History, and

Scholarship,” Journal of Computer-Mediated Communication 13:1 (October 2007), pp. 210–230.

15. Google search, “cancer blog,” February 28, 2012.

16. A listing of institutional, personal, and community cancer blogs can be found here:

https://www.navigatingcancer.com/cancer_blogs.

17. Google search, “cancer spirituality blog,” March 1, 2012.

18. McLuhan, Marshall, Understanding Media: The Extensions of Man. Critical edition, ed. W. Ter-

rence Gordon (Original publication, 1961; Corte Madera, CA: Ginko Press, 2003), pp. 5.

19. Ibid., 220–221.

20. Pausch, Randy, “The Last Lecture: Achieving Your Childhood Dreams,” Carnegie Mellon

University, September 18, 2007 (uploaded December 20, 2007). Available online at http://

www.youtube.com/watch?v=ji5_MqicxSo.

21. Interview with The Rev. Andee Zetterbaum, by the author, August 11, 2011.

22. On this see, Freedman, Samuel G., “In a New Ritual, Many Find Solace Online,” New York

Times, February 24, 2012. Accessed online at http://www.nytimes.com/2012/02/25/us/

on-religion-in-a-new-ritual-many-find-solace-online.html?_r=1&scp=2&sq=online%20

memorial&st=cse.

23. McLuhan, Marshall and David Carson, The Book of Probes, ed. Eric McLuhan and William

Kuhns (Corte Madera, CA: Ginko Press, 2003), 92–93.



Documents

Pixels Perpetual Shine: The Mediation of Illness, Dying, and Death in the Digital Age